Hi Gaynell,
Don't be in shock, sweety, this is, I'm afraid, how it is. Some of these doctors don't get too ruffled and in a way, they've got a point. You see, Gaynell, hematologists deal with some pretty deadly stuff out there and if you're not working with a cancer, then they figure you can wait your turn. And if you do go and put masto on the same line as lymphoma or leukemia or another blood disease or cancer, they are right, it's really a very benign disease and you're not in need of urgent care. Well, up to a point.
You see, unless your hematologist really understands masto, and the anaphyactic end of this, he's not going to feel too concerned about your situation cause if you're not showing aggressivity and your doctor hasn't spoken personally with him informing him of the urgency then he's not going to think it's so urgent. He'll just chock you up to being yet one more freaked out patient and hematologists deal with almost nothing but freaked out patients!! They tend to develop a rather thick skin, like oncologists do. Until they find themselves or one of their own in that spot, they don't really know how it feels to be on our side of the desk!!! One of my doctors saw his wife die from pancreatic cancer and he fully understood my fears when I was having to push my way towards the operating table for my open heart surgery! He knew well what I was going through cause he'd only lost his wife 18 months prior to my being his patient!! So, he helped me a great deal to find balance in the midst of it all.
So, Gaynell, take this as a bit of comfort in a way, for if your case were really dire your doctor would have personally contacted that hemotologist pressing him for an immediate opening!!
Yet, here's also part of the mentality with doctors....they have plenty of other patients who are in just as much need as you are for attendance. Everyone has a personal reason for why they feel their case is more urgent than the next guy. However, as the doctor, he knows whose disease is indeed more pressing and he will give priority to those patients who need it. Yet, his thoughts are these, even with his own patients - if you are in a bad spot and you REALLY are in an emergency THEN GO TO THE ER!
It isn't that the doctors are blowing us off, Gaynell, they are only being realistic about it all. They must give priority to the cases which are urgent and deadly and the rest just must wait their turn. My hematologist has a wait of over 2 months if I want to see her and even then, she's mostly useless since she's so lost in treating me!!
I remember hearing a comment made of one marriage counselor to another in that the one said to the younger, less experience counselor that it took more than a day for that couple to get their marriage into the shape it got into and so if it took them this long to get there, waiting just one more day isn't going to make a difference! The younger counselor was creating problems within his marriage because he would get phone calls from clients who were fighting in the middle of the night and would insist that they needed him to help them! Well, after that advice from his colleague, the younger counselor woke up to the reality of the situation and began to tell his clients that they would have to work out their fight and see him in his office instead. (The money wasn't worth what it was doing to his own private life and marriage!)
So, Gaynell, it isn't that the doctors don't care - they do, but unless your doctor feels that you are in real danger, they often won't try to open those doors so quickly.
Now, don't think I'm not understanding how bad your attacks are, but even this is something that many of us learn to put into perspective. I had one masto patient who was in this for over 20 or more years come out and tell me, Look, Lisa, if you've not died yet, then you're probably not going to any time soon!! And you know what, she was right! In the beginning those episodes of mine freaked me and my family out, now, after they have seen how some of my reactions are and we know what is going on, they aren't so phased and neither am I. Yes, it's anaphylaxis and it's not a picnic and the POTENTIAL is always there for it to get bad. Just listen to some of Ramona's episodes and it will cause your hair to stand on end cause she's had some really close calls. But for the majority of us, we have lesser degrees of reacting and even though it's scary as all get out, they are still not always life threatening and this is because our reactions are not IgE mediated usually. We have different degrees of anaphylaxis and so we may not have the severe life-threatening reactions. They freak us cause we've lost control of our bodies, but with time, we learn that perhaps all that freaking is not so necessary and we learn to calm down and ride the wave until it's over and then return to our somewhat normal lives.
So, Gaynell, I'm truly sorry for all you're feeling and going through and I hope you can get to see the hematologist quickly, but be patient, it's only 3 or 4 weeks away and you'll see him soon!!! When I tried to set up an appointment with my dermatologist, her secretary told me only after AUGUST!!! THAT 4 MONTHS FROM NOW!!! Gosh!!
Lisa